I'm sorry that I don't agree with a demonstration at the CDC. They 1) know EXACTLY what the ME/CFS community wants and have ignored it for decades. They KNOW. They DON'T CARE. 2) They are bureaucrats, which means they can't be fired. So all the protesting in the world will only make them dig their heels in deeper. Decision makers, who have something at stake are the ONLY people who can make a difference. I hate to say it but that generally means Congress or one of Obama's cabinet. The CFIDS Association should be on Capitol Hill every day meeting with Congressional staffers. As far as I can see they don't do too much of anything. So I'm suggesting targeting several members of Congress and possibly the Health and Human Services Secretary. I am suggesting that we target a letter writing campaign. Not email. Having thousands of letters dumped into the office makes a bigger impression than emails, which can be filtered into a fill and ignored. I'm proposing the letter writing campaign contain two pieces of paper or one piece with two elements. One page should be a bullet pointed, visual, fact sheet, with a demand for specific action, say better funding. The second page should be a person story of how the illness has affected your life. Who you were before and who you are now. The question is: who to target in Congress. I am open to suggestions. Generally a subcommittee chairman or a major committee chairman should be considered.

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Caroline,

I agree totally that caa and any patient org should be located in dc or have a designated lobbyist(s) banging on doors every day on the hill.

i think if you want to lead the type of letter writing or other effort you should start a new thread on it here in the advocacy sub-forum.

i think demonstrations are a good idea exactly because pleading with cdc and nih does not work. we need to call this to the attention of the public, congress and pres thru the media. that to me is the idea of demonstrations.

We have also done this for years. I personally have written many letters to the powers that be in the Obama Administration, including Secretary Sebelius and the Assisant Secretary of Health Howard Koh, members of Congress, Directors in the NIH, Directors in the CDC. We have given both written and oral presentations of our lives before and after ME/CFS to the CFS Advisory Committee that reports directly to the Assisant Secretary of Health and Secretary Sebelius. Look up the CFS Advisory Committee's website and read the public testimony archived there. The stories of the ME/CFS patients are truly heartbreaking. Some have given up doing this as it has gotten them nowhere and they have only ended up harming their precarious health situations further. I don't know what the solution is, but so far this has not produced results. The only thing that I know of that has gotten their attention was the "Time for Action" campaign conducted before last October's CFS Advisory Committee meeting. For two weeks before the meeting, patients emailed, phoned, and faxed in every day with the question: "What are you doing for ME/CFS today? Patients and their families are waiting." This brought about results. Even Dr. Wanda Jones announced at that meeting that certain things would not be happening at this meeting had it not been for the "Time for Action" campaign. We need more action like this to truly get their attention. Otherwise we have the very distinct possibility of being ignored for many more years to come.

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Interesting that this worked as opposed to other initiatives. So I guess everyone hammering them every day for two weeks before an event has worked. i assume we targeted everyone up to hhs secy sebelius. i'll put that in the mental filing cabinet... oops it already fell out. just remind me next time.

I was thinking of protesting in ft. collins, colorado at the cdc office there in conjunction with the main cdc protest, but decided against it because Kelvin Lord in ft.c collins can only work on it a little bit and i got PEM just thinking about what needed to be done.

fwiw- i wrote a to do list that maybe could be used as a starting point for whoever is going to organize this protest:

To Do:

- pick date
- get a permit
- contact the local support group(s)
- try to round up whomever I know who might want to go
- prepare itemized budget
- solicit and collect donations
- type up or find and print info we want to display and/or distribute
- solicit and collect messages and pictures from those who want to come but too disabled to make it and prepare sign-boards with it
- contact media
- prepare for any theatrics we have decided to do, if any (eg 'invisible' bodysuits)
- draw up some signs

Day of Protest:
- bring:
---- folding chairs
---- still and video cameras and document
---- checkbook -pay volunteers a stipend if we have decided to do this
---- snacks, soda and folding table for protesters and media
---- moltov cocktails

Post-protest:
- tell people what happened and post financial accounting

I hope that this demonstration will in the end "only" be a start (a very important one) and there will be similar events again and again. What matters is that we can win the attention of the public and decision makers that so far are not aware, i think. Then we will get a chance to talk and get our points across outside of the demonstration as well. We should be in their eyes again and again so they realize we really are there. I think especially the public is probably quite slow to realize such things and has to hear and see it again and again until they "wake up". If you don't remind them constantly they will forget about it after the next couple of stories that happen in the news.

Looking for someone to take the lead on the CDC demo? I've come to realize that, for this to be successful, it has gone way past my experience and knowledge for planning such an event. My initial idea seemed simple enough until I starting receiving input. This needs someone with experience in all areas concerned and who knows how to delagate accordingly. I started this with my heart (27 yrs with M.E. and xmrv+) and not my head. I can still help out in whatever way needed, and of course, will be there for the event. Sorry, Jim

That's ok Jimbob. We all know where you're coming from. Thanks for your contributions. I think it's also very helpful that you assessed what you could do and then changed plans accordingly.

Who can organize this? Is someone in or near Atlanta and familiar or can look up the local support groups and direct them here to spark the idea with them? Maybe someone local just needs the suggestion and will want to organize it.

I hope that this demonstration will in the end "only" be a start (a very important one) and there will be similar events again and again. What matters is that we can win the attention of the public and decision makers that so far are not aware, i think. Then we will get a chance to talk and get our points across outside of the demonstration as well. We should be in their eyes again and again so they realize we really are there. I think especially the public is probably quite slow to realize such things and has to hear and see it again and again until they "wake up". If you don't remind them constantly they will forget about it after the next couple of stories that happen in the news.

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Hi eric_s, in behavioural conditioning you can train a dog or mouse to do something using a reward and a little bell. Keep rewarding good behaviour, and eventually they respond to the bell alone. We need to keep reminding the public, again and again. I do think we also need a little bell too. Something that will stand for the issues, a symbol, an act of activism, something. Something that people can notice, if only in the corner of their eye, and start them thinking.

If we had energy I think we would have protests every week, everywhere. It is because we are so sick that we have done so little, but we have momentum now, and we need to see that momentum change things into the future.

i am not free until after mid-april. at that time, if someone has not started to organize this, i can consider doing it. until then i can't even think of doing anything. so if someone else wants to take the lead before then, feel free!

meanwhile, i have some ideas.

1. each protest has at least one HUGE sign. it would be a sheet that two people hold up. and on that sheet is one single word, SHAME! we can make a video on how to make the sign, to inspire folks, and put it on youtube.

2. stagger the events, i.e. not all on the same day. this will build momentum and excitement and press attention. plus, we can ship the sign from locale to locale, wherever the next demo is going to be held.

3. we only need 4 people at each demo:

2 to hold the sign (the sheet between two tall wooden stakes)
1 to videotape the demo (and put on youtube and email to all cdc officials)
1 to hand out flyers if there are passersby (and to give to the cdc officials you demand to see while you are protesting, a la michael moore style)

Looking for someone to take the lead on the CDC demo? I've come to realize that, for this to be successful, it has gone way past my experience and knowledge for planning such an event. My initial idea seemed simple enough until I starting receiving input. This needs someone with experience in all areas concerned and who knows how to delagate accordingly. I started this with my heart (27 yrs with M.E. and xmrv+) and not my head. I can still help out in whatever way needed, and of course, will be there for the event. Sorry, Jim

i am not free until after mid-april. at that time, if someone has not started to organize this, i can consider doing it. until then i can't even think of doing anything. so if someone else wants to take the lead before then, feel free!

meanwhile, i have some ideas.

1. each protest has at least one HUGE sign. it would be a sheet that two people hold up. and on that sheet is one single word, SHAME! we can make a video on how to make the sign, to inspire folks, and put it on youtube.

2. stagger the events, i.e. not all on the same day. this will build momentum and excitement and press attention. plus, we can ship the sign from locale to locale, wherever the next demo is going to be held.

3. we only need 4 people at each demo:

2 to hold the sign (the sheet between two tall wooden stakes)
1 to videotape the demo (and put on youtube and email to all cdc officials)
1 to hand out flyers if there are passersby (and to give to the cdc officials you demand to see while you are protesting, a la michael moore style)

warmly,
rivka

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These sound like good suggestions to me. First, preparing the bare essentials of people we need and getting out our message... A big sign saying "SHAME" is a great idea! This will really get out a good sound-bite message that attracts attention! Then if we get there we can think about adding more.

I put on a demonstration like this, a very long time ago. I was working for a social services agency for people with developmental disabilities. The Illinois government was threatening to cut funding for those programs unless a tax increase went through. We had large numbers of people (clients and parents) at the federal building and dropped an 8 story petition into the atrium. Lots of TV and newspaper coverage. In the end, the tax increase didn't go through but we ended up not having funding cut anyway.

I don't think it would be hard to do a demonstration at CDC headquarters. And Rivka's ideas are great. It seems really important, and I think we could get a lot of media coverage. The CDC wants to be seen as a credible organization, and so I think this sort of thing might have an impact when nothing else would.

The challenge is to find people to organize it. This is the sort of thing that the CAA should be helping with. I don't know if we need another organization or just a change of leadership at that one, but one way or another we really need help in terms of getting more attention for this disease.

My organization was wholly government funded. We did all of this in a way that was respectable and dignified. But we still used our outside voices -- going "outside" the normal channels of asking for government help -- to do the same thing.

Thinking of using one theme and that being the Retrovirus (not xmrv, because CDC will distort with MLVs). This will enable us to use even non me/cfs people, as it affects 20 million or so of the healthy population. With all orgs getting the word out, we should be able to get hundreds of people. all signs/banners send a message concerning HIV like retrovirus and it's ramifications. What is the CDC doing for the american people, the blood supply, etc. etc. pamphets to hand out with all the pertinent info. Megaphones with certain chants?

i actually wonder if we should *not* focus exclusively on xmrv, because in the end IF xmrv is not "it" then we'll be ignored again. but like you, i was thinking we should not stress the me/cfs name as much as "neuroimmune diseases" and include me/cfs/XMRV in that. just like the WPI does.

i am not free until after mid-april. at that time, if someone has not started to organize this, i can consider doing it. until then i can't even think of doing anything. so if someone else wants to take the lead before then, feel free!

meanwhile, i have some ideas.

1. each protest has at least one HUGE sign. it would be a sheet that two people hold up. and on that sheet is one single word, SHAME! we can make a video on how to make the sign, to inspire folks, and put it on youtube.

2. stagger the events, i.e. not all on the same day. this will build momentum and excitement and press attention. plus, we can ship the sign from locale to locale, wherever the next demo is going to be held.

3. we only need 4 people at each demo:

2 to hold the sign (the sheet between two tall wooden stakes)
1 to videotape the demo (and put on youtube and email to all cdc officials)
1 to hand out flyers if there are passersby (and to give to the cdc officials you demand to see while you are protesting, a la michael moore style)

warmly,
rivka

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Good Idea, but if it's us sickly patients, shouldn't we probably have a little buffer, so perhaps a couple extra people?

i actually wonder if we should *not* focus exclusively on xmrv, because in the end IF xmrv is not "it" then we'll be ignored again. but like you, i was thinking we should not stress the me/cfs name as much as "neuroimmune diseases" and include me/cfs/XMRV in that. just like the WPI does.

I am not big on the use of the word SHAME only, I see the Unions using this a lot recently (I belong to a Union) and the message does not resonate with me! We will have time to see how that works out, but I realize these are 2 very different situations!

I personally think something with megaphones and chants, may not work for much of the ME community (due to noise sensitivity setting off more symptoms.. very bad).. a silent and grim demonstration with various signs may work better for this community and allow more to be present.
......

I have another idea... how about some kind of growing protest for however many days it lasts (or until it gains enough media attention)... starting with just one or two people but trying to double the numbers protesting each day (as word got out more, that could happen once started). A growing protest could represent how ME/CFS could possibly be spreading in the community cause so little is known about it due to lack of research
(one could publically mention this fact without mentioning XMRV if people didnt want to).

All it would take is a small group getting together to start this and see where it goes. Even if it wasnt big, its helpful in educating people.

Just to throw in my views on this - feel free to disagree.
I was part of the XMRV protest outside the department of health in November 2010 (London UK) - to highlight the blood donation ban. We had around 50 protesters handing out leaflets etc and holding banners up. We got zero press coverage on the day and a couple of local TV stations did a 1 minute or so individual interview. They were not allowed to mention XMRV.
The only way to make them stand up and listen is to cause as many problems as possible. The media will come if this happens. We were WAY to polite and happy to stand around being nice. We should have put beds and wheelchairs across the road , stopped the traffic on which is a main road in London - stopped being so damn nice about this. It wouldn't have taken long for the Police to arrive, followed by the press. How would it have looked if the police were seen dragging off people in wheelchairs etc etc - the press would have loved it!

I personally think something with megaphones and chants, may not work for much of the ME community (due to noise sensitivity setting off more symptoms.. very bad).. a silent and grim demonstration with various signs may work better for this community and allow more to be present.
......

I have another idea... how about some kind of growing protest for however many days it lasts (or until it gains enough media attention)... starting with just one or two people but trying to double the numbers protesting each day (as word got out more, that could happen once started). A growing protest could represent how ME/CFS could possibly be spreading in the community cause so little is known about it due to lack of research
(one could publically mention this fact without mentioning XMRV if people didnt want to).

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The is somewhat ingenious, something like a monstrous demonstration after 1 week of the commencement (saturday to following sat). Almost looking like it has attracted people, rather than being planned (though is really is). Problem - will pwc be able to sustain the hardship on their bodies?